jbird1972

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Wow, that was a rough one. My veins are so damaged from all the surgeries, procedures, and hospital stays that I went through 6 IV's in 6 days, blew the first one while still in the ER, right as the RN gave me medication in it, just blew right up :(
By the end of the stay, the IV therapy nurses had been in my room 3 times in 2 days and were just struggling to get a line even with the ultrasound guided method.  It's so frustrating especially when you are there to get pain/nausea control, and it's interrupted by a blown IV and then waiting hours for someone else to try and get a line started, it's like trying to drive a truck through quicksand.  I was so weak and shaky after getting home from the hospital that it hurt to move.  I'm just "coasting" until my surgery on July 6th in Cleveland...Thank you again for all of your kind thoughts and prayers, they really do mean a lot to me :)

 had to come to ER (St. Alexius) this afternoon, sucks, but I'm truly blessed that we got to do our Mother's Day stuff before the pain/nausea reached a ridiculous level. I'm at St. Alexius in room 609 Bed B (window seat, thank goodness). I hope to just be here for a day or so, need to stop the flow of food/drink and get pain/nausea under control. I also have been tasting some blood in the back of my throat off and on, but the only time I've ever had that was after the EGD when I had the esophageal tear, and I haven't had an EGD since then...place that in the zebra pile? I don't know...my care in the ER was so-so, no rudeness, just bad pain/nausea management due to the heavy flow of patients that all came at once (I brought them with me I guess). It's been one of those things where the pain was an 8/10, meds started coming down, but then it came back and by the time you wait 2 hours, it's back to an 8...vicious cycle, same with nausea :

 I heard from Dr. Kroh's nurse today and I am scheduled for July 6th to have my abdominal/GI surgery (remove rest of stomach, re-route some intestine, and place a j-tube that will hopefully come out 6 weeks after surgery if I can eat enough). This surgery has to come before the replacement of the spinal cord stimulator. I'm really nervous, but I trust the team I am working with, and this is my only chance at a more normal life, and I have to take it. I'm just trying to take it one step at a time. If anyone out there has read my blog and then had this revision that I'm about to have, please provide feedback as to how it improved your quality of life, abdominal pain, nausea, etc...Thanks!

 I met with Dr. Rizk (GI) today, and he recommends the surgery Dr. Kroh has proposed. He has actually had patients who have had this revision surgery and none of them got worse, most had great improvement and at worst it provided some relief in symptoms and improved quality of life...I'll take it! He looked at my CT scan results, and in addition to weird anatomy from multiple surgeries, it does show that I have an internal hernia (correct me if I'm wrong, but haven't I been saying this is part of the problem for a long time? Nice to have photo evidence) I left a msg for Dr. Kroh to say sign me up, again I'm sure it will be a scheduling/insurance nightmare, but I want to get it over with and get on with my life.  I think that's it for now

 The rep from Boston Scientific and the physician assistant spent about 45 minutes trying to use the laptop to program around the lead that has migrated. They discovered that since the last re-programming, I have lost 2 more points of contact, so I'm missing 3 out of 16. This translates to less function and reduced ability to program. They are attributing this to the migrating leads (not enough fat to keep them anchored...insert irony here), and the system I have uses smaller, more flexible wires. It was a rough 45 minutes, the only way I can describe it is if you got a repeated static charge that was running down my legs to my feet, and it was also up into my ribs/chest. So, I decided (based on the good result I had for the time it was working) that it was worth saving. I don't have a date (waiting for insurance approval), but I did my anesthesia pre-op survey. It would have to be an open back surgery, the new system has the benefit of larger, flat (paddle) leads, but cannot be done percutaneously (through the skin) as the first ones were. I know it's a risk, but it's surgery either way, to either remove or revise, and it's worth it to get a working system back in place. The pain that this is for is the constant, visceral pain; even if I end up having another abdominal/GI surgery, that surgery is to restore the function of my digestive system and hopefully get rid of pain/nausea associated with food. I know it's confusing, it's two different issues caused by the same problem.  GI is tomorrow, I think I will have a clear direction after that appt for the other surgery.

 Tests/doc appts over for today, I barely made it. I was so sick from the oral CT contrast (which I syringed into my g-tube-1000ml worth in 25 minutes), and by the time I saw my surgeon, Dr. Kroh, the misery was written on my face. The CT results weren't ready yet, but pending anything bizarre I'm fairly certain we are going the surgical route of removing the rest of my stomach and bringing up a piece of small intestine up to meet it (bypassing the stomach) and he said the j-tube would be placed as a back-up nutrition method, but as long as things were getting better 4-6 weeks out he would remove that feeding tube. He is leaving the g-tube in for now, he would remove it during the surgery. I'm still seeing the GI doc Thursday, but those 2 have already spoken and they are on the same page. Once I decide for sure, I will call the surgeon and schedule surgery.  Yes, my anatomy will be back to gastric bypass days, but he reminded me that he did not do my original surgery and he feels that this is my only true shot at a more normal life...it won't be perfect, life never is, but better :) I had a similar conversation with neurosurgeon about my stimulator for the abdominal pain. I'm going back to his office Wednesday to see if a re-programming will make it work again around the wire disruption, if not, I have two choices: 1) Thinking about when it was working well, and at one point it was helping, they can do an open surgery on my back to replace the thin wires with a thicker paddle lead and regain function of the system. If it can be saved, I'm leaning this direction.  2) cut my losses if I am not confident that it's worth saving and have surgery to remove it.  I will know more Wednesday and the surgeon already told his PA that whatever I decide to just put me on schedule and the surgeon can consent me over the phone.  Oh, decisions decisions...the misery I am feeling physically today, and most days, is a good reminder that I can't keep doing this. I need a shot at getting better, we have tried time and medication and they are not working.  I'm worried, ok convinced in my own mind, that I will lose my job if I have to be off work again after surgery. I have a great manager and awesome co-workers, but I know the reality is that they needed me and they hired me to be there, it will just be really hard for me if that happens. I just have to look to the future and the potential to be better than I am now after the 6 weeks of recovery time.  I'm hoping I feel better after some rest & medication

 I'm still "heavy" one useless G-Tube...it's like a bad fashion accessory, but you can't take it off! It had to be tried, because the alternative is extreme and irreversible.  I saw Dr. Kroh at Cleveland Clinic in December for a follow-up, and he said to give this tube another 3 months to heal before we jump to the next step.  Well, here we are about 3 months later and most of what I eat/drink is just sitting in the tube, and although the tube is clamped, as soon as you unclamp it, a steady stream of food/drink runs back out.  I stopped taking my Nexium because the pill is bright purple and was very visible as it was stuck in the G-tube, clearly it wasn't absorbing.  My pain management doctor switched me from my oral pain med back to the Fentanyl patch, and mentally it just killed me, a giant step backwards.  I was still taking oral narcotic pain meds, but a much lower dose and I thought I had left the Fentanyl patches and super duper narcotic prescriptions behind me.  I wasn't in any less pain, I just know that these meds are not good for anyone long term.  I was willing to be in more pain so I could take less meds. The pain mgmt doctor put me back on the patch because like the food/liquids/medications, my liquid Lortab was leaking out of the tube as well.  I did the patch for a couple months, but each time I had to get a new one out and put it on, it just really ticked me off.  I just went back to him about a week ago and told him I'm done with the patch, so he put me back to the oral Lortab (liquid), of course trying to be hopeful but telling me it was probably not going to provide good pain coverage.  It doesn't matter anyway, even when I was on the patch I still ended up in the hospital 2 more times in the last 2 months because of abdominal pain & nausea/vomiting.  
I was able to do a telephone follow-up with Dr. Kroh (surgeon at Cleveland Clinic) about a week ago.  We still discussed the possibility of doing a Gastrectomy (removing the rest of my stomach) and bringing a Roux Limb of small intestine up to it, and leaving a J-Tube behind as a "fail safe" was for me to get nutrition if I am unable to eat enough by mouth.  I think there is still some question as to whether this could still be a small intestine problem as well as what he calls a Post Vagotomy Syndrome (Disrupted peristalsis due to dissection of the Vagus Nerve).  So, the plan is that I am heading back to Cleveland Clinic the week of April 9 to do a CT Enterography (specialized CT that will actually visualize the inner walls of the small intestine to show them any narrow or abnormal areas that might be impeding the flow and causing intermittent small bowel obstructions.  Dr. Kroh also mentioned doing a Smart Pill study, it is similar to a camera pill but instead of images, it records motility times and gastric movement, and may show any specific areas of slow down.  I really appreciate that he is doing these last tests to make sure we have covered all the ground before doing an extreme surgery that cannot be reversed.  Ironically, the proposed surgery would actually bring my anatomy back to a very similar state as to when I had the gastric bypass surgery.  I do still find silver linings in things, the only positive aspect of having this G-Tube is that the last couple of CT Scans I had, I didn't have to drink the yucky contrast, they put it in my G-Tube...but man, due to it's dysfunction, even though the RN pushed it slowly in, by the time she was done, it felt like it was traveling all the way up to my mouth.  I also was facing drinking magnesium citrate while I was in the hospital to clear up a little constipation, and that too was able to be put through the G-Tube.  I was doing some research on this CT Enterography and was dismayed to read that the amount of contrast to be ingested is roughly triple the normal amount, so I already have offered up using my G-Tube as a pathway...might as well use it before I lose it, right?
I still find things to laugh about, and through friends, family, and even friends on here, I truly know that I am blessed and reminded that it can always be worse.  I have some dark days, this next week will be stressful.  I have my social security disability hearing and my deposition for the Med Mal lawsuit all in the same week.  It's the right thing to do, and I'm tough.  I'll be thinking about what all of this has done to my kids and family, and that will get me through it.
As always, I hope this finds all of you feeling good and getting answers...the theme this week: STAY STRONG!!

It took me a few days after surgery to start eating solid food again, and as soon as I did all the food I am eating goes from my stomach and then into this tube.  I wasn't sure if it was food at first, but some colorful M&M's that I had eaten to raise my blood sugar (I was at our daughter's concert and desperate) told the tale...colorful little bits started coming down the tube about 30 mins after eating them, and it's that way with everything I eat.  I mentioned it to Dr. Guske when I saw him for my labs yesterday and he said that there should not be food coming out and into the tube unless there is a blockage further down in the stomach or small intestine
Anyone else with a PEG have this problem, and what was the cause? I don't know how much longer I can deal with this pain, it has not let up at all.  I did speak with Dr. Kroh's RN today at Cleveland Clinic, she had texted him and for the next couple days they want me to keep and eye on it and the pain, they don't want to rush into anything drastic.  I think they are hoping that the food coming out is due to severe swelling of the stomach.  I would welcome any feedback from anyone who has had a similar issue...Thanks
Jules

I did go to surgery the next day, still a nervous wreck.  I kept thinking about how much the liver can bleed when messed with, and that's when too much medical knowledge can be a bad thing when you are the one that is sick.  Each person in the OR assured me that they were going to take excellent care of me, and wouldn't let anything happen to me, I had to believe it, just so I wouldn't go insane.  I'm not sure how long I was in surgery, but when I woke up in recovery, the pain was the kind that makes your whole body twitch, even my toes hurt.  I also woke up with an IV in my neck, external jugular...I kind of figured that was going to happen, I only had one IV left going into surgery and it was barely hanging in there and small, only a 22g. It took a long time for them to get my pain under control in recovery, and then I went upstairs to my room and all the pain was back again as they moved me to my bed.  There was some sort of mix up in the post-surgical orders, so my pain med was still set to what it was pre-op, and my RN had to fight with a resident to get it straightened out...he didn't read my whole chart, just saw PEG tube placement and couldn't figure out why I would be in so much pain.  He missed the part about surgical placement, massive adhesion/scar tissue removal, and Gastropexy.  They already knew that the liver and stomach were stuck together, but there were a bunch of other adhesions throughout the abdomen that they took down.  This surgical pain has been the worst so far, even worse than the last one that was an open procedure.  I left the hospital in Cleveland on Saturday, and they sent me home with oral Dilaudid because the pain was still very bad, with instructions to take it regularly every 3 hours.  My PEG tube is for decompression, not really feeding, so I am still trying to figure that all out.  I do open it up and flush it to determine if the pain I am having is from gas/air build up in the stomach, but it isn't because venting does not help the pain.  I have been home for 2 nights so far, and I drift in and out of sleep for about 2 hours, wake up in searing/burning pain, wait the extra hour until I can take another pill, and then start the cycle all over again...the whole day is like that.  I know that a certain amount of pain is part of healing, but I have never had to take Dilaudid at home, and then to still be in this much pain is scaring me.  I am seeing the bariatric surgeon here at home (Dr. Guske-not my original surgeon, but nice enough to keep track of my labs and care when I am here at home and not at Cleveland Clinic), my appt is at 4pm to go over my labs, but obviously a lot has happened since then.  I will discuss the pain with him, see what he says.  I hope this finds all of you getting answers and feeling better, and if you aren't, then don't give up!!
Thanks,
Jules

 So, I am again pondering what bad deed I did in a previous life, maybe I killed King Tut?
Procedure tanked. My stomach is fused to my liver, so they couldn't do the gtube with the EGD method, so, they put me on sched for tomorrow to surgically implant it. Kroh is going to try laparoscopic , but said he would probably have to do an open surgery so he can free up the organs.  I'm sure I'll be in a better state of mind later, right now I want to punch someone, hard. Oh, and from whatever they tried to do today, I woke up in even more terrific pain than when I started, which I took as a good sign that they were able to do it...NOT I was such a nervous wreck that my teeth were audibly chattering :(